Some of you know, many do not know of the struggles I have had over the last six months. It has been the greatest physical, spiritual and emotional battle of my life. I went to visit my sister on August the 1st of 2009 with my Mom & Dad, Sister Heidi & niece Lydia (3) and of course my children, Hope (4) and Corban (3). Tim was in CHOBC in Ft Jackson SC.
We got settled in our first night and went to bed. The awesome thing was I woke up in the middle of the night and could not go back to sleep. I had left off reading in Romans 14 and I continued to onto 15. Romans 15:13 leapt off the page. "May the God of hope fill you will all joy and peace as you trust in him, so that you may overflow with hope by the power of His Holy Spirit." Little did I know how much I needed that verse...
The next morning we got up and went to church. We were all exhausted from traveling with three toddlers and I felt really foggy. We dropped of the kiddos in the nursery and turned to walk into the sanctuary and all of the sudden I lost control of my legs. They no longer responded to what I was telling them to do. They were shaky, heavy, and my feet no longer knew where to land on flat ground. In an instant I felt as though I walked like I had MS. Everyone thought I was just stressed and tired and it would go away. It was the scariest feeling I have ever had. They took me to urgent care, who sent me home without any answers. When we returned home I saw my regular doctor who ran an MRI and then sent me to UW Madison for more tests. I spent two days in the hospital and they ran every test they could think of. More MRI's, X-rays, EEG's, inserted needles with microphones into my legs muscles, Evoked Potential, Spinal Tap...etc. My awesome friend Natalie dropped everything to stay with me through it all.
The only thing that was abnormal was my evoked potential test, which basically told them the signal from my brain to my legs was slowing down in my spinal column. Still no answers why... The symptoms have progressed from just my goofy walking to include crazy muscle twitching starting in my legs and then throughout my whole body. I also have severe surging nerve pain that also has progressed from my legs to my arms. I sometimes can walk in the morning normally, but as I become more tired my walking becomes even more labored. Some days I cannot walk from the moment I wake up. I cannot walk through a store such as Wal-mart without much difficulty. My mom does a lot of my shopping, which is pretty humbling, because she struggles with Fibromyalgia. I have had to start using a cane. I cried my eyes out the day I purchased it.
My neurologist from Madison did not give me much hope at my last visit on January 11th, 2010. He told me I was losing the reflexes on my right side. He said he has ran every test he can think of and we cannot do anything else until the disease presents itself. He said he knew it was in my spinal column, but short of cutting it out and examining my spinal column on the table; there is nothing else he can do. He said to call him if I started to lose vision in one eye, or if I became incontinent. But otherwise, he will see my in May.
My family doctor has been much more compassionate. He has seen the progression in the last 30 days and he does not like it. I have started stumbling down stairs. I have had tremors in my hands and shaking throughout my entire body. The fatigue has gotten worse and just in the last two weeks the shaking has gone into my face. If I wrinkle my nose the mask of my face just trembles. I have become heavy headed if that makes sense, and have to lay my head back and rest. I have had worse headaches and my doctor looked at me two weeks ago and said he is afraid of where I will be in a year. He just filed for handicap parking for this progressive neurological condition which he has indicated as permanent. He is fighting to get me to a facility where they can hopefully diagnose and treat this, to find a way to slow down or stop the progression of the disease.
The hardest thing has been the fear of the unknown. Without a diagnosis I am left to my own devices. I have spent countless hours on the internet researching symptoms. Every time I get a new symptom, the fear arises again. I have struggled with times of deep depression and overwhelming fear. As I daily give it back to God he keeps me going and provides peace amidst the chaos.
We got settled in our first night and went to bed. The awesome thing was I woke up in the middle of the night and could not go back to sleep. I had left off reading in Romans 14 and I continued to onto 15. Romans 15:13 leapt off the page. "May the God of hope fill you will all joy and peace as you trust in him, so that you may overflow with hope by the power of His Holy Spirit." Little did I know how much I needed that verse...
The next morning we got up and went to church. We were all exhausted from traveling with three toddlers and I felt really foggy. We dropped of the kiddos in the nursery and turned to walk into the sanctuary and all of the sudden I lost control of my legs. They no longer responded to what I was telling them to do. They were shaky, heavy, and my feet no longer knew where to land on flat ground. In an instant I felt as though I walked like I had MS. Everyone thought I was just stressed and tired and it would go away. It was the scariest feeling I have ever had. They took me to urgent care, who sent me home without any answers. When we returned home I saw my regular doctor who ran an MRI and then sent me to UW Madison for more tests. I spent two days in the hospital and they ran every test they could think of. More MRI's, X-rays, EEG's, inserted needles with microphones into my legs muscles, Evoked Potential, Spinal Tap...etc. My awesome friend Natalie dropped everything to stay with me through it all.
The only thing that was abnormal was my evoked potential test, which basically told them the signal from my brain to my legs was slowing down in my spinal column. Still no answers why... The symptoms have progressed from just my goofy walking to include crazy muscle twitching starting in my legs and then throughout my whole body. I also have severe surging nerve pain that also has progressed from my legs to my arms. I sometimes can walk in the morning normally, but as I become more tired my walking becomes even more labored. Some days I cannot walk from the moment I wake up. I cannot walk through a store such as Wal-mart without much difficulty. My mom does a lot of my shopping, which is pretty humbling, because she struggles with Fibromyalgia. I have had to start using a cane. I cried my eyes out the day I purchased it.
My neurologist from Madison did not give me much hope at my last visit on January 11th, 2010. He told me I was losing the reflexes on my right side. He said he has ran every test he can think of and we cannot do anything else until the disease presents itself. He said he knew it was in my spinal column, but short of cutting it out and examining my spinal column on the table; there is nothing else he can do. He said to call him if I started to lose vision in one eye, or if I became incontinent. But otherwise, he will see my in May.
My family doctor has been much more compassionate. He has seen the progression in the last 30 days and he does not like it. I have started stumbling down stairs. I have had tremors in my hands and shaking throughout my entire body. The fatigue has gotten worse and just in the last two weeks the shaking has gone into my face. If I wrinkle my nose the mask of my face just trembles. I have become heavy headed if that makes sense, and have to lay my head back and rest. I have had worse headaches and my doctor looked at me two weeks ago and said he is afraid of where I will be in a year. He just filed for handicap parking for this progressive neurological condition which he has indicated as permanent. He is fighting to get me to a facility where they can hopefully diagnose and treat this, to find a way to slow down or stop the progression of the disease.
The hardest thing has been the fear of the unknown. Without a diagnosis I am left to my own devices. I have spent countless hours on the internet researching symptoms. Every time I get a new symptom, the fear arises again. I have struggled with times of deep depression and overwhelming fear. As I daily give it back to God he keeps me going and provides peace amidst the chaos.
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